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Desperate Mum to son with UARS seeking advice
#1
Sad 
Desperate Mum to son with UARS seeking advice
Please can someone help me out with suggestions to improve life for my son. 
He is 18, has been suffering debilitating fatigue for 15 months now. On cpap for 2.
It took me months to even work out what was wrong sadly, and then several months of waiting to see a sleep clinic. In which time his mental and physical health have spiralled to miserable proportions where the poor kid wants to go to Dignitas he is so sick of suffering! Providing care for him, holding down two part time jobs, struggling with unsupportive family who think he is just lazy, and trying to get my head around how to help him is leading me the same way!!

He has all the symptoms of UARS, fatigue, unrefreshed sleep etc, and is a mouth breather, deviated septum, narrow jaw, overbite, allergies, also has asthma and unrelenting ezcema. Anxiety, depression (from sleep problems). He has sensory issues too and bearing this in mind has adjusted well to using mask, wears it all the time for sleep never rips off. 

He is practically housebound at the moment and spends his time between bed and sofa, doing little other than watching tv and browsing the internet. He sleeps 12 hours at a time but always wakes up unrefreshed and exhausted. Takes another half hour to summon energy to get out of bed. As a result his sleep is all over the place and shifts on a daily basis, like a non 24 pattern. I believe that would resolve if he could sleep 8-10 hours and wake refreshed and have energy to do stuff! His consultant is largely focused on this. Refuses to believe breathing/ cpap is the issue and is trying to palm him off with chronic fatigue syndrome. He was diagnosed with home oximetry test (bearing in mind facial features and symptoms suggesting UARS) and put on cpap, well Resmed airsense 10 apap 5-15 and sent away all well and good.

The first few days he did feel better, but no relenting of the fatigue. Mentally he was less brain fogged and was waking feeling like he has slept. After about 6-9 hours. Then after a week or so he sunk lower again. I put this down to the  fact that his sleep was SO fragmented before maybe the cpap is helping a little so he did initially feel better, but has then stabilised at that new 'better' which is still pretty awful. Watching him sleep now compared to before cpap he is less restless, has very minor twitching in sleep (he had loads before) but still jolts awake suddenly every 15-20 mins or so. Before I could sense a change in breathing before the jolts, with the mask on obviously I cant hear that. We spent the first few weeks thinking he will take time to get better, then started using Oscar and I  can see how fragmented his sleep still is.

Last appt with consultant last week he insisted the machine was correcting breathing according to his 'data' (very basic!) and his ahi is good, use is excellent etc. I suggested the machine is not picking up flow limitations leading to reras, ahi is useless with UARS, would pressure adjusting help, would he be a candidate for bi-level? He doesn't like being challenged!! He told me I am looking too much into it....never had a patient with UARS on bi-level, and can tell he thinks I am just an over protective mother. He is obsessed with his shifting sleep pattern, which I agree is no good to anyone, but if he cant feel rested on 12 hours sleep his plan for melatonin at 8, asleep midnight, wake 8 and sit in front of a lightbox is pie in the sky. He doesn't see the state my son wakes up in every day Sad 
He has reluctantly arranged a sleep study in hospital but it isn't until 9/2, not long you would think but every day is traumatic in our house because of this.

I have tried raising the minimum pressure. He was running at about 6.5 when he first had cpap and it hit a max of about 9. I changed the minimum to 6 (photos included) and the pressure went up average , so I changed it one night to 8, that had no effect and he had a night waking up very sweaty (this has been happening on a regular basis, his oxymeter showed heartbeat all over the place, so I assume that is still happening with cpap), so I went all out to 11, then 12.

I've included pics from a 6-15 sleep and yesterdays 12-14.6. I've also zoomed in on breaths. I was noticing at the lower pressure it wasn't upping it for flow limitations and he was waking up....there seems to be less since the raised pressure but he still feels awful. He doesn't like the higher pressure, I have put ramp on but it still seems to go straight into pressure. These photos are only some of the sleep period as well, as I said he is in bed 12 hours ( and would be longer I think were it not for the fact that he gets a sore throat from the air if he is...he could do 20 hours in bed pre cpap. For some reason recently Oscar is only importing from 12.00, so he slept yesterday 6am-7.30pm ish machine on, but it has only shown from 12.00 onwards, no idea why.

I'm sorry this is long, we are just so desperate for help. Blood tests all fine by the way, no other conditions apart from atopic dermatitis / asthma. Hydroxyzine 25mg at night for itching ezcema and terbinafine for fungal nail infection, along with asthma inhalers and ezcema creams are only meds. I refuse to believe it is CFS he does not have muscle aches and pains, or post exertion malaise, just constant unrelenting fatigue.

Thank you for any advice, I really appreciate it.

More charts

Final ones


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#2
RE: Desperate Mum to son with UARS seeking advice
The flow rate graph is awfully ragged, and the flow limitations seem significant.

They key thing with UARS diagnosis and treatment is the focus must be on the RERAs. So do what you can to make sure the technician that does the study is aware of your concern about that.

And also, I don't know how this works in the UK: if at all possible, I would hope they can test him with machine on, and also test efficacy of a bilevel.
Caveats: I'm just a patient, with no medical training. And my first experience with xPAP was fairly recent. So I'm somewhere along the path of a steep learning curve.
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#3
RE: Desperate Mum to son with UARS seeking advice
Thank you. They will test him with his machine on and I will advise technicians. I just hope they are more understanding and open to variables than the consultant! He says he has never had a patient on bi level and scoffed at the idea... So I doubt they will do that. He is highly recognised in this field and has thousands of patients, so I can't believe my son is the only one shoved on a straight apap to be suffering...
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#4
RE: Desperate Mum to son with UARS seeking advice
You may want to try a soft cervical collar on him. That helped me greatly because I was tucking my chin to my chest. I wasn’t getting many obstructive apneas but my flow limitations were high. Being 18 he may scoff at the idea, I know I would’ve at that age but it may help tremendously. He wouldn’t wear it as if he had a neck injury. He would wear it loose, just enough so his chin rests on it. I’ll let the experts advise you about settings and bi-level machines. He looks like a candidate for a bi-level but his AHI is great so your insurance probably won’t pay for it. With the help from the experts here you’re well on your way to finding answers. Best of luck.
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#5
RE: Desperate Mum to son with UARS seeking advice
UK health care is a different experience. I think it might be helpful to read the article by Dr Barry Krakow in our wiki on using bilevel therapy to treat UARS http://www.apneaboard.com/wiki/index.php...ome_(UARS)

The charts you posted provided some useful information, but it would help if you minimized the monthly calendar by clicking on the triangle in the date-line. In addition, it helps not to display the pie chart by going to File/Preferences/Appearance, and unchecking the pie chart option. This allows the respiratory and therapy statistic to fully show.

This chart shows some of that information, and on a cursory level, this therapy would meet the expectations of most clinicians and doctors for efficacy. The AHI is low, and respiratory statistics are approprate for a healthy individual. Doctors rarely look at flow lmitation, but it is moderate with a 95% of 0.07 and maximum of 0.23. The only clude to a problem is the periodic fluctuation of tidal volume which mirrors the flow rate chart. It is clear that the median tidal volume of 600 (which is very good) is actually comprised of frequent periods of low and very high breathing volume. To me, this has the appearance of someone that has more of a central breathing disorder, than UARS, and it seems the respiratory drive is in constant fluctuation. While there is no apnea, it seems that oxygen saturation and CO2 is in constant flux.

During his upcoming test, in addition to being monitored for apnea, it is very important that his SpO2 (arterial blood oxygen saturation) be monitored. It would also be helpful to do Arterial Blood Gas Analysis and Bicarbonate tests to see if there are long-term imbalances. Neither CPAP or bilevel are able to target tidal volume and stabilize respiration. This would require a more sophisticated machine like ASV (adaptive servo ventilation) or more appropriately iVAPS (intelligent volume assured pressure support) machines which can maintain a target respiratory volume. Of course, we have no insights as to why this tidal volume fluctuation is occurring, and that is what you want your doctor to focus upon. We know your son's therapy meets the expected outcomes for AHI, and unfortunately, most "sleep professionals" will not look beyond that simple metric. You will have to show them that the problem is an unstable, cyclical respiratory rate and volume that may be the problem, along with any impacts that has to the periodic oxygen and CO2 blood gas levels.

Here is the chart I'm looking at most. If you could repair your chart presentations and focus on flow rate, tidal volume and minute vent, it might help us see if this is a common pattern.

[Image: attachment.php?aid=19453]
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Desperate Mum to son with UARS seeking advice
Sleeprider are these any better? I have included one where he felt marginally better the day following the sleep period, that was Weds 8th Jan....gosh this has given me a lot to think about. It's going to be an uphill battle as consultant doesn't like me suggesting things so will probably just refute all this. I have read about bi-level and Krakow and mentioned it to him, which again, didn't go down well. He just scoffed at me. So is this central aponea we are talking about? And would they be able to pick that up from in house study with brain monitors? He hates the sweating, especially as it sets his ezcema off!


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#7
RE: Desperate Mum to son with UARS seeking advice
At this point I don't believe the issue is UARS.
What kind of a doctor is your sleep doctor? what is his specialty?

Consider seeing a pulmonologist, a doctor that specializes in breathing issues, in lung performance. You are looking for a reason for these breathing fluctuations. And take these charts. Is this on a laptop? If so take the laptop in and show the doc how to zoom and scan back and forth. Tell him that you know this isn't the tool he would normally use but hopefully it will provide him insight on how to proceed.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Desperate Mum to son with UARS seeking advice
Much better on the charts.

We are not really taking about central apnea, because there is no apnea, but what we see is a very wide periodic fluctuation in respiratory volume. This is not a common situation, and we don't understand its health impact or if this is what contributes to fatigue and other issues you listed earlier, or if another health problem may be causing the fluctuation. From what you have indicated as the attitude of your "consultant" and what I know of the NHS consultants in general, you are not going to get anywhere, because this kind of problem is just not within their field of expertise or vision. You would almost do better with a general practitioner that is actually interested in solving a problem. Your consultant is going to look at your son's CPAP therapy from an obstructive sleep apnea point of view, and his therapy results are actually pretty good.

I don't want you to even mention the word central apnea to this guy. You need to ask him what might cause these wide fluctuations in respiratory flow and volume. Acknowledge that the AHI is good, but this can't be normal. What could possibly cause someone to vary their respiration this much? Outside of a possible sensor malfunction, this appears to be REAL changes in respiratory volume that vary from near-normal to hyperventilation. Its something you want to understand medically.

I have never personally seen this kind of fluctuation, and I don't know what it means. Most people that experience obstructive reduction in tidal volume will compensate by increasing the breath rate so that the minute vent stays stable. As you can see, in these charts, the minute vent is following tidal volume. Tidal volumes over 1000 mL are unusual, and these seem to fluctuate from 300 mL to over 1500 mL. Minute vent (air respired in a minute) is rarely over 10 L/min, but here we see it fluctuating from 6.0 to over 20 L/min. I think if your visit with this consultant does not result in some further investigation, then your best option is to request referral to a pulmonologist, based on the fact this may not be a sleep disorder, but a pulmonary issue. CPAP is certainly not a solution, and I doubt that BiPAP is either.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: Desperate Mum to son with UARS seeking advice
This has really shocked me because all the time I thought we were dealing with UARS. Is it possible he could have that in addition to this pulmonary problem? I've been focusing on upping pressure to get those breaths curved!
Since we went to 12 minimum he says he feels he is hypeventilating and like a hamster filling up with air. This is only when he is awake and panics a bit over it. It's only been a couple of days at that pressure, I set epr to 3 which made it easier.
He was out of breath the other day climbing the stairs, and seems to be needing to use athsma inhaler more, but I thought that could be seasonal.
In the meantime as test is nit until 9/2 what should I do with machine pressure? Put it back to standard apap 5-15?
I don't know how much if that time he is awake as he is in and out of sleep so much, but assume this is happening while asleep, as the big flow curve that fills whole of flow rate is when awake, so you guys can judge when he is awake vs asleep? 
One last thing for now, the Jan 8th one where he felt better and it was lower pressures, is the same thing happening there? 
Taking all this in at the moment, thank you so much!
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#10
RE: Desperate Mum to son with UARS seeking advice
UARS you would treat with mostly pressure support, not pressure.
Try EPR=3, range 7-15 (this provides the EPR=3 throughout the range, 5 cuts the EPR to 0 at the low end)
Both mine and SleepRiders comments still stand.

Post screen shots after the 1st night of these settings
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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